Trek for Tourette: Support for Friends and Family with Tourette Syndrome

Jimmy Whales Takin' it All In

How to Ask for Money Without Sounding like Jimmy Whales

When I first started writing this blog entry, I found myself writing,

“Dear The People,

Thank you so much for being such loyal and awesome readers.”

Then I stopped myself, realizing that I had written a load of garbage.

Wait, wait, no, no! Not because it’s not true! You, The People, are excellent in so many ways. I can’t thank you enough for your continued excellence!

The problem is, if I were to explain to you my appreciation, my TRUE appreciation for your excellence, I would make a separate blog entry, no? I would never, say, compliment you and butter you up in order to cook you in the oven of FUNDRAISING. Lure you into my ginger bread house then trap you with guilt and manipulation.

Basically, the compliments were not coming from the right place, and I apologize.

This made me realize that usually when I read any articles that end in solicitations, they follow pretty much the same formula:

1. Flattery For You

2. Why We Love What We Do

3. Why We Care So Much About Said Charity

4. We Wouldn’t Be Able To Do What We Do Without Your Support And Generosity

5. Can We Have Some Money Now

I’m not saying that this is a terrible formula. It works well, and you gotta pay the billz! So that’s fine. The problem is that it’s not very sincere, and everyone knows this. You’re not foolin’ anyone, even if you tell me I’m pretty and that I look good in short shorts! (Thank you).

So I’m going to start over. And this time, it’s personal.

I’m going to start by telling you my story.

When I was growing up in the small town of Shediac, New Brunswick, it was absolutely normal to hear F words, JC words and other cussies in the house. The finger was also a normal part of our household. Now I’m not saying a 7-year-old Cindy could go up to Mom and say, “hey Ma, what the F*** are we having for dinner?” No way in heck. In fact my parents considered it offensive to swear, and we were trained to speak properly.

That means that we had two sets of ears:

1) the kind that were sensitive to bad words and would remind us to change the channel or turn off the movie if there were too many.

2) the kind that barely even batted an eye (yep, ears bat eyes now) when the shouts echoed through our house.

My dad was the unmistakeable Touretter of the house. He invited parents over who got in contact with him through the Tourette Syndrome Foundation of Canada, to discuss how to handle their children. I remember watching them pour out their feelings and anxieties, not knowing what to do!

My dad even travelled (and still does from time to time!) with my mom to different schools to explain to children and teachers the dynamics of the disorder.

Tourettes often includes other disorders like ADHD:

We in the business call it TS+.

The most interesting part of our Tourette adventures was the annual Bike-a-Thon we’d have to raise money:

The one that's the kid is me.

The After-Party

Tourettes Are Cool

Long story short, for me, it was a lot of fun and games. We had a community of friends with TS. We celebrated our different styles of tics, and laughed at the random and silly ones!

Oh I guess I shouldn’t say “we”! My bad. I didn’t know I had Tourettes, and neither did my brothers. We always supported Dad and our many friends, but our signs weren’t obvious back then. My Dad could tell, but we were in denial.

My symptoms have progressed since then. In 2004 it was mild, in 2008 it was at its highest peek, where I couldn’t go 10 minutes without having a tic.* Now I have it mostly under control, but things like stress, sugar or alcohol can bring it back with a vengeance! Oh and cold temperatures, oddly enough.

I was 13 when we had our last Bike-a-Thon and we went out with a bang. It was our most enjoyable year yet. They couldn’t continue though…Kids grow up and find other interests. Other life goals become a priority.

Now the Tourette Syndrome Foundation has started a new annual Fundraiser, the Trek for Tourette, to be held this Sunday, March 25th, 2012. This is the 4th Annual Trek, but I only heard about it last year.

Last year around this time, my mom was excitedly telling me about the new fundraiser, and to be honest, I ended up saying, “meh.” I’m not some cute kid who can go knock on doors and say, “Hi! Tourette Syndrome! Sign here!” and people kind of scratch their heads and go, “Well hi there little girl. Here’s 5 dollars.”

No, times have changed!

But this year I decided to do it.

I decided because back when I had a supportive community, I “didn’t have Tourettes.” Now I do, and I live in the big city of Toronto, where I don’t know too many people here who have it. So I signed up, Joel and myself, so we could meet some new people and start over with some new friends.

It’s really important to get together with people who have the same difficulties as you. If you have any health issues, mental or physical, you KNOW how great it is to feel like you’re not alone.

So that is why I wrote this blog. To express my need for Tourette Camaraderie.

And to let you know that my dream job is to help kids with TS, and give them the comfort and warmth that I had growing up, and that my Dad was able to provide for many other people too.

I know I didn’t talk much about money in this blog, and that is because the funds are my secondary reason for doing the Trek. But I will let you know that I may have overshot and made a goal of raising $200….and right now I’m at $20.

So…there isn’t much hope of me reaching my goal…

OR IS THERE??

If you’d like to help me reach my goal to bring over 20 dollars to the Trek, please go here:

http://www.tourette.ca/eventscalendar-event.php?entry_id=14136

Click “Make a Pledge” and in the dropdown list, my Team is called “Jocynth” under Toronto.

Thanks so much for listening, and IOU one “you are such loyal and awesome readers I could just die!” article! 🙂

Thanks again,

Pertobello

My Brother Psyching Himself Up For Bike-A-Thon

*Tics vary WIDELY from person to person. My usual tics include hitting myself on the forehead, jerking my neck, biting my hand, saying the “S” or “F” word, or saying other words that happen to be rotating in my mind, like my husband’s name “JOEL!!” I guess that kind of sounds like “d’oh!!” eh? 😉

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About pertobello

I live in Toronto but I'm from the east coast originally. I like photography, psychology, writing, pictures, the brain, literature and the creation of, taking snapshots, therapy (of myself and others), manuscripts, digital renderings of events and places, exploring the capablities and workings of the human mind, transcribing my thoughts and stories into a readable format. Wow I have an impressive list of interests!! cindy.pert@gmail.com
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3 Responses to Trek for Tourette: Support for Friends and Family with Tourette Syndrome

  1. Artoveli says:

    Aw, I went through the entire pledging process until it got to the payment method and it turned out they’re only accepting credit cards. No PayPal. 😦 I was totally going to pledge!

  2. Hello my friend! I wish to say that this post is awesome, nice written and include approximately all vital infos. I’d like to peer more posts like this .

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